Families reveal the heartache of living with muscular dystrophy

Families affected by life-shortening, rare conditions, in the South East have told of experiencing anxiety, insomnia and depression because of a lack of emotional support at the time of diagnosis.

Following a snapshot survey of 700 people living with a muscle-wasting condition, Muscular Dystrophy UK has found that more than three quarters of families received absolutely no emotional support during diagnosis, leaving many vulnerable to developing debilitating mental health issues.

The charity heard from people who have received their own, or their child’s devastating diagnosis over the phone and from others who were advised to “search on Google” for more information about their condition, whilst they waited in limbo, often for years, before receiving a firm diagnosis and specialist support.

There are currently between 6,000 and 8,000 known rare conditions in the UK, affecting approximately 3.5 million people. The nature of the conditions mean that those affected are often left abandoned and isolated with nowhere to turn. The findings of this survey will be common among all rare conditions.

The ‘Isolated and abandoned: The hidden impact of rare conditions’ survey heard from people living with rare and progressive muscle-wasting conditions, and found that since coming to terms with a diagnosis:

· 1 in 5 people experienced suicidal thoughts and over half of respondents experienced feelings of depression;

· More than 60 percent of respondents experienced feelings of isolation with only fifteen percent of people offered assistance in connecting with another family living with the same or a similar condition, which charities such as Muscular Dystrophy UK can help with;

·A quarter of people were left in limbo and forced to wait more than three years for their diagnosis after first raising concerns, with a third of people having had a misdiagnosis at some point during this process.

· Less than a third were offered emotional support either for themselves or their family members.

Psychological support for people affected by progressive, muscle-wasting conditions is scarce, with only five dedicated specialist psychologists in the entire country. With people living with a long-term condition two to three times more likely to develop depression than the rest of the population*, Muscular Dystrophy UK is now calling on the NHS to ensure that every individual or family diagnosed at a muscle centre or clinic can access support from a Psychologist; ideally one with neuromuscular expertise. The charity also want to see more health professionals sign-posting to charities to help people get the emotional and practical support that they need.

Muscular Dystrophy UK will feature on BBC One’s Lifeline Appeal on 22 March 4.45pm. The appeal will be presented by charity President, Sue Barker